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My Dad has myeloma

24 Jan 2023 22:09

So back end of 2022 we found out my dad has myeloma cancer they caught it early, he has just finished recently some sort of chemotherpy wich he has been having every Friday. So next month (February 2023) he is due to go into hospital for stem cell treatment, he will be in hospital for one month im told. Hes doing everything by the book and I'm so so proud of him , my dads thee old fashioned typical male type dosent talk much about hos feelings, proud, shows no sign of fear or weakness typical 1950s brit, hes my idol! my hero ! My best friend! So last weekend i found out from my mother that without this treatment he would most likely pass away within 12 months we may get 2-3 years with him more. Im 32 about to turn 33 next month im lucky to have had him for these years some people dont get that im blessed to have been given this time with him and just to basically have him hes the best! But ill be honest i cant imagine life without him i think about it everyday. Knowing the time i have with him now is limited and i know the obvious of cherish the time i have with him value it, be there for him, and my mum! I know all this but bottom line is its breaking my heart slowly and i have a feeling when the time comes my heart will be fully broken. 

 

If someone out there has been in a similar situation to me, i would really love and appreciate to hear from you . What you did how you coped with it from start to finish! 

 

Day 1990 

My Dad has myeloma

25 Jan 2023 14:13 in response to Day1990

Hi Day1990

i can understand and empathise totally with you! I lost my Dad last year to metastatic melanoma and was heart broken. My dad had melanoma for 5 year but was only poorly for the last 6 months or so...I took him to all his appointments and spent what time I could with him.

Although I miss him terribly I take comfort that I got to spend so much time with him and as you say some people don't get to do that, I lost my mam to cancer when she was only 49, my dad was 65 so al least I got longer with him.

I know you feel lost and scared but you don't know how strong you can be until you have to...just be there for your mam and appreciate any time you have now with him...nothing is guaranteed and who knows you may have longer than you think.

im sending you love and hugs xxx

My Dad has myeloma

26 Jan 2023 13:33 in response to Day1990

Hi Day 1990,

I think you may have misunderstood.

An SCT can give 2-3 years Progression Free Survival, that is before the next relapse (disease progression).

As I understand it, it does not affect Overall Survival.

Furthermore, nobody can tell how long someone has to live; myeloma is a very individual disease with different responses to drugs etc.

Been trying to answer your post for days now but have only just managed to find the right words.

I was diagnosed with Myeloma in Oct/2016 and have had several lines of treatment. This then, is my 7th year and I'm now on palliative care with possibly a few months left; at least I beat the 4 year average.

 

Best Regards

Taff

My Dad has myeloma

26 Jan 2023 16:54 in response to Taff

I would suggest that you have a look at the Myeloma UK website as the information you have been given is incorrect.

The previous poster has pointed out that the disease is highly individual as are the treatments that may be offered. I know that this is the case as my husband was diagnosed with myeloma and had a stem cell transplant in 2020. He was not in hospital for a month either. He was back home within 10 days and we were on holiday in Greece 3 months later.

New treatmemnts are being used all the time and there are patients who have survived for many years after diagnosis. 

My Dad has myeloma

26 Jan 2023 21:28 in response to Spiderdog

Hi Spiderdog,

I'm unsure if your post is a response to mine or to the original post.

 

Best Regards

Taff

My Dad has myeloma

27 Jan 2023 09:57 in response to Taff

Yes, you are right. It was meant to be a reply to the original post. I realised as soon as it was posted but couldn't find a way of deleting it. I won't be posting on this site again.

My Dad has myeloma

27 Jan 2023 13:32 in response to Spiderdog

Hi Spiderdog,

Thanks for the confirmation, I'd hate to think I was posting wrong information and just wanted to make sure. I hope I didn't offend with my question.

I hope your husband goes on to have many, many years. I was told a couple of months in Oct/22 but I seem to be getting stronger.

Wishing you and yours all the best for the future.

 

Best Regards

Taff